Excerpted from When Every Day Matters: A Mother’s Memoir on Love, Loss and Life (Simple Abundance Press) on Amazon
I always felt so close to my husband, Dick, as I observed him loving Katie, loving Richard, our son. He was never jealous of all the attention I gave to our kids right from the start. A wife can feel that; she knows the difference. As a couple we worried about Richard because his nature was sweet and sensitive and because the reality of our tie with Katie naturally meant that there was less time to focus on him. We did our best staying involved with Rich’s life, but Katie was diagnosed in 1989 so we’re not just talking about a year or two. I think this sibling situation is more complex in terms of time and attention when the other children are younger.
Looking back, I realize how lucky I was marrying someone like Dick. His steadfastness and dependability alone made the choice a lasting one and, unconsciously, it felt familiar to me. We always go to the familiar, unless we are living a very conscious existence, and at twenty years of age when we met, I wasn’t terribly conscious. Fortunately, Dick’s positive traits were ones of strength and integrity – traits I consistently experienced in my own mother and Dick clearly had the best of her plus he’s enormous fun like my father.
Yes, dear Reader, Dick and I have been traumatized by our daughter’s illness. And, like other parents who have witnessed their child go through physical and emotional turmoil this vast and prolonger and have seen the sick child’s sibling suffer the worriment too, we know that we shall never be the same again. And how could we be? We know for sure that love exacts a cost.
Katie and I often discussed our lives. A cancer diagnosis alerted Katie to what might happen to her: a premature death and she didn’t need reminders. Before the second stem cell transplant there was concern that malignant cells had entered her spinal fluid – which would be very bad – so an X-Ray of her spine was ordered. The doctor, who had known Katie for years, insensitively commented, “Well, Katie, you’ll never die of old age.” He was responding to a question Katie had asked him like, “How does it look?” and he gave his nasty response. It hurt her and it made her angry, a rarely expressed emotion for Katie. He made his remark out of my earshot and I was furious when Katie told me. But she made me swear I would say nothing to him. “It’s really okay, Mom, I just won’t invite him to sit on my medical board once it is in place.”